I was also diagnosed in 2012 and has surgery in 2013. I continue on meds and have many health issues still. I haven’t had a full recovery and dramatic weight loss or anything. I’m now starting to regret surgery as it has left me very limited in what I can do. I was far more mobile before. I miss my life. I’ve lost everything since having surgery!

I, too, was diagnosed with a pituitary tumor and subsequently had surgery to remove it. I still struggle day to day with many issues…word finding, comprehension, emotions. I also struggle with finding Cushings disease support groups in our area.

A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disea […]

Your case is every similar to mine. I wasn’t a dancer but I did play multiple sports in high school and played college basketball. I saw doctor Yuen at Swedish as well and many more doctors as well. I have never got my case or my symptoms solved. Over 4 years of doctors and testing. They found I had a pituitary tumor and mildly high cortisol in my 24 hour Ur […]

Thanks for sharing your story. In February it will be 6 years since I’ve had my pituitary surgery. My health is constantly up and down as well. I was just wondering if you’re treated for depression or anxiety at all? Also, have you found any exercises or physical therapy to be helpful?

Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were complete […]

A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report.

You’d imagine if you’d never set foot in a rowing boat before, apart from, say, an abortive attempt in a boating lake age 9, that you would set yourself a fairly tame goal for your first challenge when you did finally take up the sport.

Not so Kiko Matthews. The science teacher-turned-paddle board instructor and adventurer, this time last year a total beginner in a rowing boat, set herself the challenge of rowing solo across the Atlantic – before she’d actually picked up an oar.

Not only does she plan to raise £100,000 for King’s College Hospital with the row – after they saved her life when she was struck with a rare disease – but she plans to break the female world record for a solo Atlantic crossing while she’s doing it.

The previous record for a woman rowing solo across the Atlantic is 56 days, the male record is 35.

Kiko plans to do it in 45, taking 11 days off the current female record.

Her determination and dedication indicate that she’ll do it too.

She has been training daily for 7 months since she made the vow (she hadn’t even been drinking when she made it, she tells me) in order to smash the record for the 3,000-mile trip.

On the way she will encounter storms, freezing nights, scorching hot days, sharks – and a whole lot of solitude. ‘I have to be skipper, medic, my own best friend – and, sometimes, no doubt, my own worst enemy,’ she says.

She’ll have an emergency button in case of crisis — and not much else, besides her equipment and her ego.

A rigorous regime of on-land and on-water rowing, circuits, weights and cross-training with cycling and running is preparing her for the 16 hours a day of rowing she’ll have to put in to make the record crossing.

The months of 4am wake-up calls are, as you’ll see from her Facebook and Instagram posts, made somewhat easier by incredible sunrises, sunsets and glass-like oceans, but they are nonetheless gruelling.

However, they will have set her up for what will be six sleep-deprived weeks where she will try to shoehorn what sleep she can – a four-hour chunk and a few cat naps throughout the day – into the eight hours she has to eat and rest when she is not rowing.

No matter how much work she is putting in, the challenge is ambitious — but her chances are improved immeasurably not only by her tenacity (you have to meet her to believe it) but the fact that the boat she is using for the crossing is the same one that was used by the current male solo Atlantic World Record holder, Charlie Pitcher.

He set the new record for solo male crossing in 2013, taking 35 days to row the 3,000 miles in the carbon-hulled, 6.5m ocean rowing boat Soma of Essex.

His boat was the first of its kind to have the rower facing backwards into the waves rather than rowing forward, which made the boat far more aerodynamic and helped him to shave 5 days off the previous 40-day record.

And, as Kiko says, ‘when you’re in the middle of the Atlantic with nothing for miles either side, you don’t really need to see where you’re going anyway.’

Now, Pitcher has not only lent Kiko his record-breaking boat, but he’s helping to train her too. And, having been exposed to the whirlwind that is Kiko Matthews, he is confident she can achieve her goal.

‘I met Kiko at a charity function we were both involved with and we just hit it off immediately, like we had known each other for years,’ he says. ‘I wanted to lend her the boat because I believe she has what it takes to smash this, and not many others do,’ he says.

‘To break a tough world record like this, you need all the right tools in your bag. Kiko has the full house.’

The mammoth physical undertaking is all the more impressive when you understand how far Kiko has come health wise.

The once fit young woman was so rapidly debilitated by this mystery disease she had to drag herself upstairs on her hands and knees, yet doctors could not find out what was wrong.

Unlike most people with Cushing’s, who experience the condition worsening over a long period, sometimes years, the size of Kiko’s tumour meant the symptoms were aggressive and dramatic.

As she deteriorated, she was quickly referred to King’s College Hospital where she lay for a month believing she would die before doctors were able to diagnose Cushing’s.

Even then, her potassium levels were too low for her to survive surgery so she was taken to intensive care unit until she was strong enough for doctors to operate and remove the tumour.

Kiko says now that those were her darkest times. ‘I couldn’t see, I couldn’t speak properly or think. I was too weak to move,’ she says.

Ultimately, the disease could have proved fatal. But with the tumour finally removed, the levels of cortisol in her blood reduced from 3,000 mcg/dL to 30 mcg/dL in three days.

Within five, the brain fluid stopped dripping from her nose, the swelling in her body had gone down, her memory returned and diabetes and other symptoms vanished.

Soon after her recovery, Kiko left her role as a science teacher to set up SupKiko, a company teaching paddle boarding, and a charity, The Big Stand, that gives opportunities to young people and those with mental health problems.

While she still leads paddle boarding groups, most of her time is now spent training for the Atlantic crossing, which sets off from the Canary Islands in January.

….

Ironically, both the challenge and fundraising attempt for KCH has added poignancy now.

A few months into her training, Kiko began to feel ‘strange’ symptoms and, as they developed, she began to suspect the return of Cushing’s.

An MRI detected a 3mm tumour on her pituitary gland, confirming her fears, and she found herself back at King’s where Kiko says that the doctors, who remembered her aggressive and rare case 8 years ago, have been ‘fantastic’.

She is booked for surgery on 1 August when surgeons will go in through her nose to remove the tumour quickly so that she can continue her training.

‘With the help of an amazing team of nurses and doctors, I’ll be 100% fine for my row in January. I’ll make sure I am,’ she says.

‘The tumour returning has only made me even more determined to break the record and raise the money,’ she says.

It’s Sunday again, so this is another semi-religious post so feel free to skip it 🙂

I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn.

My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.

Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.

So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.

In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.

I was terrified and sure that I wouldn’t survive the surgery.

Somehow, I found a 3-cassette tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.

At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.

When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.

Abide With Me was on this original tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.

I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.

This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.

If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.

This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.

Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:

O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.

For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.

In case you haven’t guessed it, my cause seems to be Cushing’s Awareness. I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising my son, keeping the home-fires burning, trying to forget all about Cushing’s. My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL. At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s. Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge). I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio. I filled out a form on Power Surge to request a quote for building one. I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me. I was so nervous. I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back. Alice showed me how to do some basic web stuff and I was off. As these things go, the O’Connor Music Studio page grew and grew… And so did the friendship between Alice and me. Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2012, we have over 8 thousand members. Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

In August 2013 my friend died. In typical fashion, I started another website…

I look around the house and see things that remind me of Alice. Gifts, print outs, silly stuff, memories, the entire AOL message boards on floppy disks…

After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

I thought I had written down the scripture reading carefully. I practiced and practiced. I don’t like speaking in front of a crowd but I said I would. When I got to church, the reading was different from what I had practiced. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

The real scripture turned out to be Psalm 116. I got very emotional while reading this and started crying when I got to verse 8 “For you, O LORD, have delivered my soul from death“. Others in the congregation who knew part of my story were very moved, too.

Psalm 116 (New International Version)

1 I love the LORD, for he heard my voice;
he heard my cry for mercy.

2 Because he turned his ear to me,
I will call on him as long as I live.

3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.

4 Then I called on the name of the LORD:
“O LORD, save me!”

5 The LORD is gracious and righteous;
our God is full of compassion.

6 The LORD protects the simplehearted;
when I was in great need, he saved me.

13 I will lift up the cup of salvation
and call on the name of the LORD.

14 I will fulfill my vows to the LORD
in the presence of all his people.

15 Precious in the sight of the LORD
is the death of his saints.

16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.

17 I will sacrifice a thank offering to you
and call on the name of the LORD.

18 I will fulfill my vows to the LORD
in the presence of all his people,

19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

This Psalm has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. “My” psalm was listed as the reading for my birthday, so I had to buy this book! For a while, it was the license plate on my car.

I used to carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver but now I have this info on my phone and iPad.

On the other side there is an article I found after my kidney cancer. You can read that article in yesterday’s post.

I used to carry a print out of this everywhere I go because I find it very soothing. This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Nineteen of the 2015 Cushing’s Challenge. These days, both these readings are available on my phone.

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.